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Newly Diagnosed - Day 3 - Feeling lonely

Marnee101

Hi all,

I was diagnosed with ASD at 39, on Sunday. My dad has psychosis and brother has an undiagnosed condition. Already there is a lot going on in our small family.

My best friend supported me and even sat through part one of my ASD assessment. He has provided support, but I’m not sure if I should disclose it, to my sisters and my mom, as I don’t want to seem, like a burden or for them to see me any differently or less than. Do you think I should share it? although, I have good friend support. When I was getting overwhelmed with noise, I was thinking I wish I could tell them, sometimes I need to isolate to recover.

Then it suddenly hit me, I was feeling lonely, even when surrounded by family.

  • I’m sorry you feel so lonely. Cinnabar gives good advice below, I have nothing new to add to that . The word autism means different things to the general public and often wrong information. It’s hard to share with your family, even though I’m sure if you broke your arm you would tell them and they would be supportive. So I’m trying to say but very clumsily I get where you’re coming from. 

  • in reply to Cinnabar_wing

    Brilliant, thank you so much for the kind advice. I think I will hold on tight yet, let myself get used it first. Then maybe one day, if I feel there is a need.

  • I'm sorry your feeling so lonely, it's a difficult place to be, wanting to share and feel accepted, though I know I've heard it's not always what you hope for. I don't have the answers, but I know the feeling, I've not actually told my parents or one of my siblings, though I have shared with two of them, and it was fine. It would be wonderful to know how the conversation will go before hand, and have an undo button. I suppose the only thing you can prepare yourself with is information to answer questions they might have(this page from NAS seemed helpful in things to consider -www.autism.org.uk/.../talking-about-and-disclosing-your-autism-diagnosis).

    Finding ways to talk about autism before disclosing helps to figure out what their views might be first - famous people can help with this, if you say you found out so-and-so is autistic and it really interested you, or something like that, in your own way. It might give you an Idea how they feel about autism and give a chance to educate them a bit positively if needed before letting them know about yourself. My own way was letting them know about my son's diagnosis and then seeing if I could say I was too. You don't need to rush it if you think you need more time to process it yourself. It's different for everyone, and if you want to tell them, I'm rooting for a good reaction for you, and I'm glad you have a friend that really understands too.

    Best of luck to you.